Next step

[CarolineC]

Well, my Herceptin has been delayed for the second time because of low ejection fraction on my echo. I'm having a great debate right now because it looks like the cancer is in the adrenal gland and going into the kidney, but coincidentally I have had some bad reactions after a Pamidronate treatment and after having the oral and IV contrast that I think have "pissed off" my adrenal and shocked my kidney and that is what they're seeing on the scan. Also, coincidentally the contrast stuff can affect blood pressure, fluid levels and what do you think controls those? The adrenals. I have finally figured out that I've been getting more dehydrated after the scans and I have been getting worse and worse after each one, especially with blood pressure problems I already had. I felt better, only in the last few months, because on the recommendation of a nutritionist, I started having a 1/4 tsp good quality sea salt in my food and drink all day. My blood pressure started reading again and the lower back pain I'd been having for a year and a half (started after my first scan in May 2012) disappeared. Although I had been drinking water, I was dehydrated most likely because of electrolyte imbalance.

So I'm dehydrated and getting worse after each scan which dehydrates me more and I had also been on a bisphosphonate which you need to be well hydrated when taking. Usually I have a scan every 3-4 months and an echo every 3 months and the echos are not usually right after a CT scan-except for the last two. In Sept I had a scan, had red eyes and shakiness within a day, then an echo 3 weeks later and the heart function is down, so I'm taken off Herceptin. Two weeks after the echo and a day after I should have had Herceptin, I have a MUGA and my function is back up. In Jan I had a CT scan, had pressure headaches and radiating pain down my right arm within a day, and two weeks later the echo and heart function were down again. I requested another echo instead of a MUGA because I want the least amount of stress on my body and I don't want to be injected or radiated anymore for awhile. I had the echo on Tues, (3 weeks after the last echo) and my ejection fraction is back up and I'll have a reloading dose of Herceptin tomorrow. Thank God, because I've been really achy for over a week.

I have been on a vicious cycle of reacting to the scan solution affecting my adrenal which affects my blood pressure and affects my heart. I have seen a local cardiologist who said the bp can affect heartrate because I do want to make sure my heart is okay.

Tomorrow I'll be talking to my onc in the larger centre about what to do about the adrenal.I've talked to an endocrinologist (a nice doctor who I met last year in Van in a 20 min appt and who assured me I was fine) who says to take it out. I've talked to my rad onc-who I trust and like-and he's offered SBRT. Both of these options entail no more right adrenal gland. Yes, I can live with one adrenal but what will that be like? Someone in my in-person support group had his kidney and adrenal taken out after kidney cancer and then he got prostrate cancer and has diabetes and thyroid problems-the adrenal controls those as well.

I'm considering TDM1 but it's so new-only approved in Oct and not even covered yet, I'd have to go through my husband's insurance to get it. I'm sure they would give me the highest dose, being protocol (hate that word), and would that possibly give me lung inflammation which could then be seen as progression?

What I would really like is to have Herceptin weekly or at a higher dose. Why? Because when my treatment was delayed last fall I had a reloading dose when I restarted and I felt great for about a week and my TMs went right down. They rose again by the next treatment but a couple of points less. This gives me a clue that my body needs Herceptin in some capacity. There is no evidence to support weekly or higher doses so I'm out of luck. I believe, for me, that would be the least invasive option and I would basically keep on the same treatment. Afinitor/Aromasin has been mentioned but not approved with Herceptin.

Basically I guess I wait until tomorrow's doctor appointment to find out if there are new options. My main concern has been my family-my son is graduating in a few months and has also been through so much. I just want to make cookies (although my sternum still hurts so it's abit difficult to stir) and spend quality time with him, not reacting to scan stuff like I have been or adjusting to a new treatment right now.

It's expensive for me to have radiation elsewhere because locally it isn't available and I've already moved twice to another location at a cost of thousands of dollars to have radiation before. I will do what I have to, I guess, but I'd sure rather spend money on helping my kids out financially and being here for them.

Any suggestions would be appreciated. Thank you for reading.